1 Introduction

Consumers, defined as individuals with lived experience of specific health conditions, offer valuable experiential insights and can contribute to the design, conduct and dissemination of research projects [1, 2]. Despite the growing recognition of the importance of consumer engagement in advancing patient-oriented research and research quality, researchers face substantial challenges in effectively engaging a diverse spectrum of consumers and appropriately acknowledging their contributions to the research process [3-5]. Some of these challenges include uncertainty about appropriate recognition methods, inadequate compensation, time and financial constraints, and limited guidance or infrastructure for acknowledging consumers' contributions [3, 6-8]. These difficulties are further compounded by institutional inflexibility and a lack of policy support [7].

A pivotal aspect of these challenges relates to the issue of remuneration—the financial compensation offered to consumers in recognition of their contributions in terms of time, skills and expertise to research projects [7, 9]. Remuneration can take various forms, including direct compensation and reimbursement for out-of-pocket expenses such as travel, parking, meals and childcare [3, 10-12]. Offering remuneration may allow consumer partners from different socioeconomic population groups to be engaged in research and thus encourage the inclusion of diverse perspectives [10].

To support researchers in engaging consumers in research, various institutions have developed frameworks and guidelines aimed at addressing the intricate issue of remuneration [3]. Examples of these institutions include the National Institute for Health Research (NIHR) from the United Kingdom [13], the Patient-Centred Outcomes Research Institute (PCORI) from the United States [14], Strategy for Patient-Oriented Research (SPOR) from the Canadian Institutes for Health Research (CIHR) [15] and the Belgian Health Care Knowledge Centre [16]. Notably, from this latest scoping review, which collected available policies and guidelines for patient partner compensation, no document providing national guidelines was retrieved from Australia [16].

Health consumer organisations within the Australian states and territories, including New South Wales (NSW) [17], Queensland [18], the Australian Capital Territory (ACT) [19], Western Australia (WA) [20] and South Australia (SA) [21], have developed their own remuneration policies for consumer engagement; however, there is variability in rates and types of remuneration in the different jurisdictions across Australia. Little is known regarding how research organisations in Australia recognise consumers' contributions, either financially or non-financially. Similarly, health organisations' attitudes and perceptions regarding remuneration, including targets (eligible receivers of remuneration) and methods in current practice, remain unclear. Whether it is necessary to build a national consensus on remuneration rates to meet the needs of research practices remains unanswered. Given this significant knowledge gap, we sought to explore the perspectives and practices of Australian health research organisations regarding recognition, including financial remuneration, of consumers' involvement in research.

2 Methods

3 Results

The survey was open from 10 December 2023 to 29 February 2024. Of the 503 recipients who opened the email invitation, 124 accessed the survey via Qualtrics. Among these, 110 participants completed the survey (22% response). One possible reason for the low response rate is that the survey was conducted over the holiday season in Australia when many people take annual leave. Participant characteristics are presented in Table 1.

Most participants (86%) were from the academic field, with 47% from universities, 29% from medical research institutes and 10% from research organisations. Similarly, most participants were from not-for-profit organisations (89%) and larger organisations (81%) with > 50 employees. Only three participants selected ‘none of the above’ when asked about the type of organisation and nominated state government, research consultancy and community health representative when asked to describe their organisation.

4 Discussion

To our knowledge, this survey represents the most extensive examination of research organisations' perspectives on remuneration practices within the Australian context. The findings revealed that most research organisations advocate for the recognition of consumer contributions through both financial and non-financial means. However, there is considerable variability in current remuneration practices and a lack of consensus on specific aspects, such as remuneration methods and rates. Notably, our findings suggest an overwhelming majority of participating organisations support the establishment of national guidelines or recommendations for consumer remuneration practices. Findings provide a comprehensive overview of current remuneration practices and may have significant implications for both individuals and the broader consumer engagement community.

Previous research indicates that recognising consumers' contribution is crucial for successful consumer engagement in health research [5, 22, 23]. Multiple studies have demonstrated that offering financial or non-financial compensation plays a critical role in supporting sustained and active consumer engagement [24-26]. Recognition methods can be financial (e.g., honoraria) or non-financial (e.g., co-authorship). However, our research found that organisations employ a variety of methods for recognising and remunerating consumers' contributions, potentially presenting dilemmas for researchers or institutions who are seeking guidance in relation to this. For example, roughly equal proportions of participants indicated that they utilised academic recognition, such as co-authorship of or acknowledgement on publications, provision of training or skills development opportunities, and employment of team-building activities, such as social gatherings, to show their appreciation for consumers' contributions. These non-financial recognition methods align with the reported practices in the literature, though the distribution percentages differ. Findings from a recent systematic review [10] on recognising patient partner contributions to health research showed that the most common methods of non-financial compensation reported were informal acknowledgement of research outputs (65%) and co-authorship (49%), while only 28% of participants in our survey supported non-financial academic recognition methods. Furthermore, a scoping review [16] of available policies and guidelines on supporting consumers' contribution compensation indicated that the most commonly recommended methods of non-financial compensation were offering training opportunities to consumer partners (40%) and facilitating participation in conferences (38%). These discrepancies in the non-financial recognition of consumer's contributions may cause confusion in practice, potentially hindering consumer engagement in health research.

These inconsistencies are also evident in financial remuneration practice. Financial remuneration, in particular, can facilitate more equal and accessible engagement by removing significant barriers [27]. Without financial remuneration, only consumers with the time and resources are able to participate in research. A systematic review from 2023 identified four commonly reported methods of financial compensation: honoraria, gift cards, salary and scholarships [10]. Consistent with these findings, > 50% of participants in our study provided financial remuneration in recognition of consumers' contributions, with indirect payment methods such as gift cards or prepaid Visa/Mastercard being the most common. However, there are substantial differences in specific remuneration rates. For example, 48% of participants used a per meeting/activity rate to remunerate consumers involved as team members, while 29% preferred an hourly rate. Conversely, only 14% of participants used an hourly rate for consumers involved as research participants, with 47% opting for a per meeting/activity rate. While we were unable to examine the extent to which the level of engagement was associated with the payment methods reported, this aligns with recommendations from Australian state and territory remuneration guidance documents that suggest different compensation rates based on the roles of consumers in research [17-21] and presents an opportunity for future research to do so. These policy documents vary in their recommendations, and while it is reasonable for different states or territories to develop unique remuneration guidelines tailored to their local context, having multiple guidance documents can pose challenges.

Similarly, the recognition process of consumer engagement in the current Australian context varied substantially between organisations, with less than half of the responding organisations reporting a formal process for remuneration of consumer engagement. The implications of this were reflected in the free-text responses indicating that clear and consistent guidelines to inform remuneration practice would be helpful. This finding aligns with barriers identified in previous literature [4, 5, 10, 28, 29], which emphasises the important role of institutional policies and guidance [10]. These barriers can limit a research team's ability to offer financial remuneration to consumer partners. Two other notable differences highlighted in the survey responses related to organisations' provision of information about the potential impacts of paid remuneration and whether consumers are given the option to decline financial remuneration. The potential impacts of financial remuneration on consumers include jeopardising disability or social security payments or affecting income tax rates. This impact is also reported in the literature [7, 10] as an important consideration, acknowledging that consumers can refuse remuneration and the need for researchers and consumer partners to co-develop a remuneration strategy that balances recognition with potential risks associated with financial remuneration [10].

The administrative burden associated with the remuneration process reported in our study was reflected in reports of substantial documentary requirements and time, with the majority of participants reporting that onboarding a consumer took more than 1 h. This significant time investment, particularly if a research project involves many consumers, generates an additional bureaucratic burden for researchers. This has been echoed in a US study indicating that funding recipients spent 42% of their time on administrative activities, including pre- and post-award processes [30]. Alleviating the administrative burden of the process of consumer engagement would be a motivating factor for researchers to engage consumers in their research and again presents a potential challenge to be tackled by future research.

Additional costs, also considered eligible for reimbursement for consumer engagement, refer to the expenses associated with consumers' participation in research projects [31]. These costs could include transport, parking fees, time for pre-reading, accommodations, conference attendance, babysitting/caregiver services, home printing, technology or internet access and so forth [6, 16]. Our survey results indicated significant variability in responses. Approximately one-third of participants supported payment of transport, parking fees and time for pre-reading, though the methods for remunerating these costs varied across organisations. Regarding transport and parking remuneration, 40% of participants answered that their organisation provides support upfront (e.g., taxi voucher or parking permit), while 40% offered reimbursement after payment. This can create a dilemma for consumers who must initially cover these costs themselves and later claim reimbursement, potentially navigating complex billing systems or providing invoices [6]. Such inconsistency in current reimbursement practices may pose challenges for both researchers and consumers new to engagement in health research.

Notably, an overwhelming majority of participants (92%) in our study supported recognition of consumers' contributions to health research, employing both financial and non-financial approaches. Similarly, the majority supported the establishment of national guidelines or recommendations for consumer remuneration practices. A scoping review of policies and guidelines supporting patient partner compensation practices in April 2022 did not identify any national documents from Australia [16]. This highlights that there are currently no national guidelines on remuneration of consumer engagement in Australia. As mentioned, guidelines exist across individual Australian states and territories [17-21]; achieving consistency in these would enhance consumer recognition practices and facilitate broader consumer engagement in health research.

5 Strength and Limitations

This project was conducted in collaboration with Research Australia, involving active engagement from eight of its member organisations within a working group. One of the project team members, who is also part of this working group, played an instrumental role in our research and is included as a co-author in this publication. A key strength of this paper is the formation of the working group, whose expertise and support guided the study. The co-development of the survey exemplifies this collaboration and ensures the construct validity of the questions asked. Another strength is the pilot testing of the survey by three lived-experience researchers. Their expertise in research ensured the survey's content validity, while their experiential knowledge from lived experience guaranteed its applicability.

However, several limitations must be noted. First, the study is limited to the views of participating organisations that are members of Research Australia. While these member organisations are distributed across Australia and may reflect the perspectives of a broader research community, the study may have missed voices from research organisations that do not belong to this formal network. Additionally, without an existing portfolio for the member organisations of Research Australia, we could not determine whether the responding organisations accurately represent the distribution of large, medium and small research organisations in Australia. Both these factors potentially impact the generalisability of the findings. While the working group included two consumer-led research organisations, the voices of consumers themselves were largely not included in the research. Future research focusing on the development of consumer recognition and remuneration guidelines must include the consumer perspective as an equal voice in developing these. Lastly, the anonymity of the survey means we cannot verify if multiple responses came from the same organisation, potentially affecting the heterogeneity and representativeness of the survey results.

6 Conclusion

This study provides a comprehensive overview of the current recognition and remuneration practices of consumer engagement in health research in Australia. The responses indicate that most research organisations support recognising consumer contributions through both financial and non-financial means. However, the variability in current practices and the lack of consensus on specific aspects, such as remuneration rates and methods, underscore the need for national guidelines. Development of such guidelines in collaboration with research organisations and consumers is an essential next step to optimising consumer engagement in Australian research.

Statements relating to our ethics and integrity policies: data availability statement, funding statement, conflict of interest disclosure, ethics approval statement and patient consent statement.

Author Contributions

Mingming Zhou: conceptualisation, methodology, writing – original draft, writing – review and editing, software, data curation, investigation, validation, formal analysis, visualisation, project administration. Julia Dray: supervision, conceptualisation, methodology, data curation, formal analysis, writing – review and editing. Anne Parkinson: conceptualisation, methodology, data curation, supervision, formal analysis, validation, writing – review and editing, investigation. Alice Richardson: formal analysis, writing – review and editing, supervision, methodology. Lucy Clynes: conceptualisation, data curation, writing – review and editing, resources. Jane Desborough: conceptualisation, methodology, data curation, supervision, formal analysis, validation, writing – review and editing, resources, investigation.

Ethics Statement

This study received ethics approval from the Australian National University Human Research Ethics Committee (Protocol 2023/1263). All participants provided informed consent.

Conflicts of Interest

The authors declare no conflicts of interest.